Thank you to the Medicine X conference presenters who got me thinking about science and the role patients can play in moving research forward. Corrie Painter you're an inspiration!
Last month I attended the Stanford Medicine X conference, on scholarship, as an ePatient delegate. I've since had the chance to speak with Daniel Levine, on RARECast, about my experience, and conference topics of interest to the rare disease community.
"There are people with narcolepsy all over the place. 1 in every 2,000 people have narcolepsy. So it's really not that rare but it's invisible...By me telling my story, other people realized that they weren't alone either. See, we don't always have a cure for the diseases, but we do have a cure for the loneliness today," says Julie Flygare, the founder of Project Sleep & author of Wide Awake and Dreaming: A Memoir of Narcolepsy. Julie's tip from experience,
"Prescribe another patient."
-Julie Flygare, Stanford Medicine X 2015
If you could be that patient, that shares your health story to support others in feeling less isolated, try Julie's storytelling advice, "Begin Anywhere–Just Begin." Julie offers her perspective and other practical suggestions in the Using Storytelling to Raise Awareness for Your Rare Disease RAREToolkit.
"A good rare disease story is both personal and educational. It explains the disease enough and in a way that the general public can understand. It does not necessarily gloss over the facts and couch everything in terms of hope. It is honest. It is personal."
